Well, we are back to thickening up Andrew's liquids. This time to nectar consistency. I thought he was having more of a problem with solids but the speech therapist said it is with liquids again. At the first drink out of his sippee cup he aspirated(went to the lungs) and then had penetrations. Not good! I was hoping that with the Vital Stim we would have been good for a bit longer but I guess 6 months isn't too bad. The SLP also said that she would not recommend Vital Stim again and that maybe we should try something else.... I don't know what that would be, considering we having done the Beckman Oral motor program- that's when we flew to Florida over spring break and spent time with an SLP who specializes in oral motor disorders. ?? Not sure what we should do but I am frustrated at all that we have to do- the eye patching 4 hours a day to make his left eye stronger, 2 hours a day with his AFO's (ankle-foot-orthotics), potty training (what a mess), now thickening liquids and trying some oral motor exercises. AAAGH! I want so much for Christmas to special for him but I know that it will never be what we want. He may never open a gift, or have the excitement of waking up on Christmas morning and rushing to look inside his stocking or understand the meaning of Christmas. Lately I have a hard time looking for gifts for him and telling others what he would want or need. It's just hard. I feel sad and then I look at his sweet smiling face and realize there is no reason to be sad because he is always a happy little boy. Wow, he's teaching me a lot!
We are a family of five living in San Antonio, TX. Our son Andrew was diagnosed at 20 months with Autism. We knew that something was still not right about his diagnosis. After many doctors appointments with specialists and geneticists he received a diagnosis of Rett Sydnrome in November 2008. He continues to struggle daily with communication, swallowing, using his hands and with breathing. We really feel blessed with every day we are given and we are learning to love and live with life's many challenges.